Interstitial Cystitis or IC- diagnosis right before wedding!

posted 3 years ago in Wellness
Post # 2
Member
1016 posts
Bumble bee
  • Wedding: August 2014

I had what I believed to be IC and went on a very strict diet avoiding all the common trigger foods and got really physically fit as well. I did this for a few months and finally got relief. 

It has mostly gone away unless I’m absolutely gluttonous with my diet – but my biggest problem is alcohol and juice. I also stopped wearing undies at all. I didn’t drink coffee, carbonated drinks, alcohol, juice, anything really but water and lemon water. No tomatoes, artificial foods or dyes, strawberries, no citrus except lemon as I heard it helped, no chocolate, and NO CRANBERRY JUICE! …for as many months as it takes. 

I also took A. Vogel’s cystoforce for a month which has uva ursi and echinacea. 

Post # 4
Member
444 posts
Helper bee
  • Wedding: August 2014

Hi!

  I have IC, too. Isn’t it just great? It sucks at first, but it really does get better.

  Like the previous poster, I find diet to be a big component. I, too, avoid caffeine, coffee, chocolate, tomatoes, most fruits, acidic/spicy foods, soy, and most processed foods (dyes and preservatives). It’s a pain at first, but it truly does make a difference.

  I also take medication. I think at first it is overwhelming, but once you find the right combination, life will improve. I take amitriptyline and Elmiron. I think a lot of IC-ers take some kind of pain med. Some take allergy meds, too (some doctors think IC has an inflamatory component). For myself, Elmiron was a lifesaver, and I have had zero side effects from it (I know there is some scary stuff out there about hair loss).

  I imagine your going through a stressful and scary time. I can tell you that it can be really scary at first, but once you figure out the best combo of meds/lifestyle changes for you, life does go on. Stress can be a trigger (I actually will have pain if I get in a fight with my FI!), so take care of yourself. I also had to learn to be, really, shameless about my need to use the restroom. Friends understand. And stay hydrated. The urge to not drink can be really strong, but, ultimately, not drinking can cause a lot of pain and flares.

 

Post # 6
Member
1466 posts
Bumble bee
  • Wedding: August 2014

Karenina:  That’s funny, I don’t have IC, but I had a neck injury that took 2 years to heal. I’ve found that that is body’s favorite place for stress to go- when something stressful is going on, whether at work or with FI or with my family that’s where it hurts. There must be something about that. 

Post # 7
Member
1169 posts
Bumble bee
  • Wedding: September 2014

I am so sorry to hear about your diagnosis. I was in misery for months before I was diagnosed with IC. After research, I decided not to take the medication suggested (Elmiron) due to the concern of hair loss. I have found a few things that work for me: diet, exercise, and BENADRYL! First off, I can usually sense when it’s about to flare up and at that time, I avoid alcohol, spicy food, caffeine and chocolate. I also do a lot of stretching. However, thie biggest thing for me is Benadryl. I read that it might help somewhere on the internet and gave it a go – it works for me 100% of the time. If I feel pain coming on, I take one pill and my pain is completely gone within 20 minutes. I asked my urologist about it and she thought that it be helping with swelling. I also find it helps to avoid holding pee as much as possible – the minute I feel like I have to go, I go. 

Post # 9
Member
1169 posts
Bumble bee
  • Wedding: September 2014

Strawberryshmoo:  Yeah, it’s a miracle for me! The only problem is that it can make me tired. I have found that if I’ve got a big event where I want to make sure I feel good, I will take a Benadryl at bedtime the night before. I will probably do that the night before my wedding! 

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